No one can fail to be moved by the desperate plight of little Alfie Evans. People across the country, and indeed the world, have witnessed this most personal of tragedies unfold. They have seen Alfie fighting for his life in hospital, and watched while his courageous parents returned to courtrooms time and time again in their fight to secure their right to make decisions over his care.
But this is a situation that could happen to any parent or carer, anywhere in the UK, at any time. Suddenly, your child could be involved in an accident or become gravely ill. On top of the shock and trauma, if the hospital chose to cease treatment, you would then face exactly the same legal fight as Alfie’s parents, and many before him. And the outcome would be the same – you would, in all likelihood, lose.
This aberration must stop. Even as a barrister myself, I have been dismayed by the way Alfie’s parents have been sidelined; their pleas set aside and their very human concerns ignored by the system. We cannot go on treating parents as bystanders, little more than unrelated and largely unwanted visitors when it comes to the decisions made by doctors and the courts.
The world has watched this tragedy unfold and they are horrified. Our legal system has looked down its nose at Alfie’s parents and failed to give their concerns the weight they deserve. Alfie’s father, Tom Evans, a 21-year-old young man, has had to stand up in the High Court and battle to save Alfie’s life against some of the most expensive, well-paid QCs in the country, paid for by the state through the NHS. How can that be right? It isn’t. The law must change.
“Alfie’s Law” would introduce a number of important safeguards that would redress the balance. First, it would introduce independence into a one-sided system. What parents need right now is someone on their side to help and support them through the court process. By selecting an impartial advocate from a panel to act on their behalf, the parents would have someone on their side from the very beginning.
Secondly, under Alfie’s Law, parents and carers would be given the right to commensurate legal funding when appealing the decision of a hospital over the care of their child. For the parents, appeals are not only enormously stressful, they are incredibly costly too. In Alfie’s case, while the NHS has been able to command large legal budgets to fight the parents' request for alternative treatment, Alfie's parents have been left to fend for themselves, often representing themselves in court or relying on pro-bono support.
The inability to raise the necessary funding has a profound effect. In some cases it might mean that parents, desperate though they are, just cannot afford to continue their fight, and they will forever see the death of their child as a reflection of their lack of money. This is a heartbreaking situation.
Finally, Alfie’s Law would give the right for a second opinion from a parent-chosen healthcare professional who is independent of the NHS, and would force the courts to give this medical opinion equal weight. This is a key factor in many cases. The vast weight of medical evidence delivered by one set of professionals can become a rolling stone, trampling over opinions from all other experts. There is a danger, also, that once the hospital decides on a certain course of action, they get tunnel vision; they become closed to all other arguments or evidence.
In Alfie’s case, many feel that the NHS has closed ranks, and that “groupthink” within the organisation has meant that doctors cannot question their colleagues' assessments. We cannot let this continue.
It’s time for Alfie’s Law. No one wants to witness any more parents going through what Tom and Kate have been through. The government has the power to act, and it must do so.
Steven Woolfe is an independent MEP for North West England as well as an English barrister
The opposite view has been written for Independent Voices by Samantha Batt-Rawden
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